At Risk Patients Preparing for Major Travel

LtotheK

Hi everyone,

I thought starting this thread would be helpful to me as well as women ahead of me who have exciting opportunities they can't pass up, but want to be vigilant about LE prevention. I'm traveling to former Soviet Union in December, so excited! I want to prepare myself as well as I can, so here are my questions/thoughts.  My thoughts are cobbled together from lots of awesome info on the LE threads:

1.  The jury is out on whether compression sleeves should be worn if LE is not present.  As my PT will not fit me with a 20 mm sleeve (lower than standard 30 mm), I am not sure about my decision in this arena.

2.  I will be eating low salt meals, drinking plenty of water, and taking melatonin to sleep and keep stress down while I fly and adjust to jetlag.

3.  The area I'm traveling to is not as hygenic as we are accustomed to.  Should I get oral antibiotics for emergency if I get cut? Should I take them preventatively?  What should be in my toolkit besides bandaids, a compression sleeve, and antibiotic ointment?

4.  If I start to swell, is that when I should put on a sleeve and gauntlet?

Any other thoughts for the gals going wild places?

Denise-G

I would NEVER go without a sleeve without flying.  And this is why:

I met two women recently who totally changed my mind on any research contrary to wearing a sleeve or wrapping when flying:

1)  My Nurse Debbie during Radiation.  Debbie was 10 years out from BC.  Never thought twice about wearing a sleeve anymore.  She took a 2 hr flight from Ohio to NYC.  When she landed her arm was twice the size it was.  The LE has NEVER gone away through therapy and all kinds of other treatments.

2)  Amy - I met Amy in the waiting room of my MO office.  She had on a cute sleeve and I went up to her and asked where she bought it.  Amy then told me no one warned her about LE and flying.  She only had 1 node removed and wasn't worried about it.  On a 3.5 hr flight from Michigan to Arizona, LE appeared and she is now going to physical therapy 3 times a week and has to wear a sleeve every day during the day.

These were my warning signals to never fly without a sleeve or wrap.  My LE Specialist says don't believe what you read about studies and no sleeves. 

LtotheK

Thank you so much! This is the kind of practical advice I'm looking for, and it is so so so appreciated.  The studies seemed to indicate a sleeve might weaken the lymphatic system if worn in a patient without active LE.  Kira and Binney have both mentioned on other threads that those of us without active LE have to make up our own minds, but honestly, I've not heard of LE being triggered by sleeves.  I do hear it being triggered by flying here all the time.

Today, I bought antibacterial body wipes (in lieu of showers to keep bacteria like staph down on the body) and anti-bacterial band aids.  I am also investigating good, waterproof gloves so my hands don't get torn up working (in water! making felt!).

Keep it coming!

pupmom

I'm going to India in December. I don't have signs of LE, but of course am concerned about the long flight. Should I ask for those sleeves during my trip?

LtotheK

Hi Yorkiemom, what I'm hoping is this thread will be a complete "how to" list for those of us doing long travel.  You absolutely should get a sleeve for the flight, given the number of nodes you had removed.  I hope Binney and Kira will pipe in.  In addition, you want to have a "survival kit" with antibiotic creams and such to keep yourself in good shape and lower your risk.  Lymphnet.org has a good travel page, but the issue for those of us without LE is some studies Edited to Add: on wearing compression garments with no LE present--seem to indicate it can precipitate LE.  Edited to Add: Kira on another LE thread cites these studies, and they look less than solid in some cases.--My take is that is a minor concern for those of us with significant risk, but others may have thoughts.

pupmom

Thanks so much for that info LtotheK. I will call my BS tomorrow and get the sleeve. This thread is a great resource! I'm adding it to my Favorites.

carol57

Kira has posted in the past about the very questionable quality of studies that concluded sleeves are not needed when flying.  For me, one look at a flimsy plastic water bottle during and after a flight tells me that the cabin pressure is not always even--the bottles sometimes flex inward, literally. 

A few added thoughts:

When flying, some women choose to wear the sleeve and hand protection (gauntlet usually, if you're in precaution mode) an hour before and at least an hour after the last flight.  It's hard to say this is 'recommended,' because well...that's the problem: there are no evidence-based recommendations for this!

While in flight, stay hydrated and move as much as you can. Walk the aisles as often as you can, and while seated, do deep abdominal breathing and put your fist up in the air and pump it (open-close, open-close), say 15-20 times. Do this every hour or so when you're not sleeping.  If you have been taught manual lymphatic drainage (MLD), do what you can of that--the breathing, clearing the neck and armpit nodes, whatever you can manage in the privacy of an aircraft full of people.

When making connections, make the most of your layovers by walking. That means keeping the carryons light and small and rolling.

Try to limit any baggage you'll have to lift on your own, to weight that you know you can safely lift. If you have to lift something yourself, use good lifting practices--don't bend from the waist to pick it up; instead, use your legs by squatting down as needed to reach the handles, grip with two hands, and use your legs to bring you and the suitcase back upright. Holding the case close to the body puts less resistance on your torso, arm, and back than holding it with outstretched arms. 

We traveled to Moldova a couple of years ago. The drinking water there is largely contaminated with giardia, and we were staying at peoples' homes, in remote areas, with no access to purchasing bottled water. So we brought backpackers' filter bottles, which remove amazing amounts of 'stuff.'  In addition to drinking that water and brushing our teeth with it, I sure felt better washing DH's hand with it when he cut himself. The bottles are lightweight, and you can fill them with any water that isn't actually muddy.  This is how we get our water while kayaking here at home, when on multi-day trips away from developed areas.

Make sure that some of your bandaids are waterproof.

Bring a thermometer to help you decide how sick you are if you get sick...and fever can signal cellulitis, a serious risk of LE.  Bring a fine-point indelible marker, so if you should get a cut or a scratch that develops redness, you can draw a circle around it and know, during the next 12-18 hours, if it is spreading (and then you take the just-in-case  antibiotics you have with you).

LtotheK, if you're working in water, are you at any risk of your important possessions getting wet? Like your first aid supplies? In which case, bring a real dry bag that will protect them, not a ziplock that will leak easily.  Aloksak is a brand to investigate.

These are items I would consider--hopefully others with different experiences will add their own ideas.

Sounds like exciting trips for LtotheK and for yorkiemom!

Carol

LtotheK

Carol!  Thank you!!  I was hunting for this info, and that is a huge help. Oh, wow!

I am going to be making felt with a group of women in the Caucasus mountains.  Felting uses tons of water, but it's not submersion. Between the water and soap, my hands took a beating, so I am experimenting with gloves.  I will report back on what I find with that!  Gloves are important.

carol57

LtotheK, I forgot to respond to your question about preventative antibiotics. I have no qualification to give advice there, but I can tell you that before we traveled to Moldova, we went to a travel medical clinic for shots and advice.  That physician had us fill prescriptions for an antibiotic, but she was crystal clear that we should not take it unless we were pretty sure we were dealing with an illness--not ahead of time. For us at the time (before my LE) the concern was not cellulitis, but gastro-intestinal problems from tainted food or dirty water.  But I suspect that unless you have a history of cellulitis, it's probably neither needed nor wise to take an antibiotic preventatively.  Perhaps Binney has some cellulitis-specific information on this question.

In the mountains, you may want to think about wearing a sleeve?  I'm way out of my knowledge here, but high altitude can cause flares for those of us with LE.  I know this topic has been in some threads here, and my recollection is that those who are accustomed to going up and down sometimes have no problems, but others do--so there's no definite answer, like the airplane question.

And one more thought is that when my hands get dry and the cuticles start to look ragged, from washing hands often, or in summer from water sports and swimming, I swear by Vitamins A&D ointment.  Greasy as heck, but it seems to heal things quite speedily and makes a bit of a water barrier.  What I don't know is if that's a bad product under a gauntlet or glove.  I tend to slather it on at night, when I'm never in sleeve/gauntlet.  I started using A&D on the advice of my PS after my reconstruction, when a large patch of skin died and did not respond to Silvadene he prescribed. When he switched me to A&D, I was astonished at the visible speed of healing.  In any case, you'll want a good moisturizer to help after all the hand dunking.  Gloves that make you sweaty may cause as much difficulty as no glove at all, if worn for a long time at a stretch.

Gosh, it's fun to think about such a totally cool trip! 

Carol

pupmom

Hubby and I went to Cambodia a few years ago. We took Tamiflu with us, not antibiotics. I'm wondering if we should also carry antibiotics to India.

vlnrph

Carol always has excellent advice! Try plain cotton gloves over your A&D ointment to keep the greasiness under control.

As a pharmacist, I would advocate for having a broad spectrum antibiotic such as cephalexin with you in case a skin infection develops. Prophylactic administration would not be advisable (unless you are already on therapy due to a history of multiple cellulitis episodes): that practice only encourages the development of resistant bacteria.

For India, you may wish to obtain something for GI treatment in advance although potent meds are for sale there without prescription. Exotic areas such as Africa will require anti-malarials, taken prior to leaving and for a period of time upon return. 

carol57

We are so very fortunate to have women from all walks of life and in all kinds of professions posting on these boards! I once saw a cartoon drawing of a bunch of people walking in a street scene. Each person was carrying a bag, briefcase, backpack, or big purse of some sort. And each of these was drawn in the shape of a jigsaw puzzle piece:  We each bring one piece to the great puzzle of living.  Here, we get practical advice drawn from lots of 'been there, tried that' experiences, plus some wonderful professional insights from nurses, the occasional PT and others, including vlnrph, who have special knowledge they feel comfortable sharing.  Thank you vlnrph. 

LtotheK

Carol, it is incredible.  It's why I contribute most of my breast cancer money to this organization. It is not a hyperbole to state that the women (and men) on these boards are a huge part of my being able to reclaim my life after cancer!  I plan to print these out for my emergency kit.  I keep a separate container of all things related to my BC care, in case I end up somewhere and can't help myself.

carol57

I saw a friend this morning who is enduring treatment for non-Hodgkins lymphoma. She's hanging in there and feeling optimistic, but frustrated because she has not found the kind of support community for her disease, that we have all found here.  We are indeed fortunate to have this resource.

liefie

Carol, I need advice from you. In December I will be flying a long flight from Vancouver to Amsterdam, have a short layover for one and an half hour there, and then fly another long flight to Cape Town. Do I wear the compression sleeve from start to finish without ever taking it off? Altogether it is about 22 hours of flying. I don't have LE, but want to take precautions.

LtotheK

Liefie,

For that short a layover, yes, you'd wear it the entire time.  Sometimes, when I have a four or five hour layover, I will take it off (of course if no swelling is present) and take a break.  Bu in your case, you'd wear it straight through.  I, too, do not currently have LE.  It is a confusing universe for us.  My PT says "go with the gut", which is their ways of saying "we don't know what to tell you based on mixed studies".  Focus on things we know can't hurt:  low salt meals, lots of water,deep breathing, moving, and taking good care of yourself.

Binney4

Hi, all,

StepUp-SpeakOut does have a page on the air travel/compression garment controversy. It's here:
http://www.stepup-speakout.org/Controversial Studies on Compression Garments when Flying.htm

One important issue to remember is that the garments have to FIT REALLY WELL so they don't create a tourniquet effect at any point on your arm. Checking out the fit with a well-trained lymphedema therapist would be a good way to assure that it's all good-to-go. Here's information on proper fit:
http://www.stepup-speakout.org/proper_fitting_of_lymphedema_garments.htm

Also really important is always to wear hand protection (glove or gauntlet) when wearing a sleeve, in order to prevent any swelling from getting "stuck" in your hand.

And hey! We want pictures when you get back, y'hear?! Safe travels,
Binney

carol57

I don't have anything to add, except to emphasize Binney's point about the good fit. At home, we would not sleep in day gaments, for fear of a wrinkle or a fold that would cause that tourniquet effect while we were unaware. Sleeping is inevitable on such a long flight, so fear of wrinkling competes with fear of low cabin pressure. I would want to wear the sleeve, so I would double check the fit before such a long series of flights.

liefie

Thanks, everybody. I will wear it the whole time then. When I get to the other side, how long before I can take it off?

carol57

liefie, I don't think there's a universal guideline.  Some say to leave it on for an hour; others say to leave it on equal to the amount of flight hours.  That second one is not going to work for you with your long flight!  My guess is that if you hold out for one to two hours, you will have done what you can to ward off trouble.  After you take it off, do some deep abdominal breathing and put your fist up in the air like I hope you would have done on the airplane, pumping that fist open and closed about twenty times.  And then...enjoy your trip!!

LtotheK

Now that I'm putting this together, I realize all you wonderful people posted some outstanding feedback in this forum: Thinking about flying. (I'd like to blame this "doh" on cancer, but truthfully, it's just a crazy schedule.) I am making a master document.  If anyone would like what I put together, please feel free to PM me.

Other preparations I'm doing:  I'm creating a document with my medications listing to put in a bag with LE sleeve and other necessaries.  I am alerting my colleagues that all the information they need should anything go wrong is in there.  I've put all the prevention strategies from here in the document, as well as links from Step Up, Speak Out.

Also, I have a business card holder that has all of my doctor's cards in it.  I carry that in my pocketbook, and my husband and colleagues know I have it in case of emergency.  Most PTs will take emails to coach if anything goes wrong, that is a relief to me!

pupmom

I called my BS's office and they agreed I should wear a sleeve when we travel to India. Got an order and am going to be measured for the sleeve today. Thanks so much for this thread. I might have stupidly left on this long flight without a sleeve otherwise.

Binney4

Yorkiemom, if you wear a sleeve be sure to wear some hand protection as well. A glove or gauntlet (fingerless glove). Otherwise any swelling may settle in your hand, where it's hard to get out.

Bon voyage!
Binney

pupmom

Oh, thank you so much for that information Binney! I'll ask medical supply people today about that.

Melrosemelrose

Thank you ladies for all of your advice/help here.  I'm planning a trip to Boston from Houston this weekend and an "at risk of LE" person.  I talked to my BS about the compression sleeve/gauntlet and he thought I'd be fine without one.  However, he did say that if I wanted to be extra cautious that I could get one.  He referred me to medical specialty shop to be get the sleeve/gauntlet.  Of course, they just had the sleeve and no gauntlet to fit me.  So I got the sleeve and ordered the gauntlet online on Friday and it arrived on Monday.  So I'm ready to go.  Thanks again for all of the  great info!!!!

bubbalu

I'm 3 yrs from diagnosis and have not had to deal with LE and don't want to!  I'm flying from PA to CA in May and I was advised to wear my sleeve and gauntlet one hour before flight, during flight and one hour after I land.  Keep my arm elevated as much as possible, move around and do deep breathing and fist pumps after removing sleeve.  I am at risk having a modified radical on left and 12 lymph nodes (6pos).  No LE so far.

I was fitted for my sleeve/gauntlet after tx and was 15 pounds lighter then.  Wondering if I should get a new sleeve?

hugz4u

BUB, You should give it a trial wear a hour or two hours at time well before you go, see if it binds you in the elbow or squeezes you uncomfortably. I gained twenty after my bilateral but most of it was in my upper body and arms so I had to order a max for my upper arms instead of regular width that I had ordered earlier. I am thinking that if you had custom garments that you would need refitting also. Off shelf is a bit more forgiving fit wise. If in doubt get remeasured or reevaluated by a certified fitter. You must not be uncomfortable or you could make things worse.



Don't forget tons of water during flight. Getting up and down to pee gives you an excuse to walk the isles. Who cares if people think you have a tiny bladder, you are saving yourself from a potential life problem!

bubbalu

That's great advice.  I tried it on today, haven't worn it in a long time, wore it when I was doing weights after surgery.   It feels tight at the top so I decided to do what you suggested and get it re-evaluated and get another if need be.

WaterWaterWater - I must remember that one! 

Thanks for the info - have you flown since BC with a sleeve?

Melrosemelrose

Bubbalu- Just got back from my trip to Boston.  I didn't have any problems with the compression sleeve/gauntlet and glad that I wore it.  I put it on after I had gone through the TSA security check point.  I sat next to a RO on the way back to Houston.  He immediately recognized the sleeve/gauntlet and asked if I had LE.  I told him that I didn't but didn't want to risk getting it.  I also told him that my BS didn't think I needed one but could get one if I wanted to be extra cautious.  The RO said it was a good idea to wear a sleeve/gauntlet even if one was just at risk and didn't have LE.  I bought some bottled water before I got on the plane so I would have water to drink during the flight and wouldn't have to wait to get some from the stewardess.  Enjoy your trip in May!!!!

crystalphm

I always travel with my own medications, cipro for most issues, and I think i have augmentin for possible LE issues. I do wear a sleeve and gauntlet for all flying, as well as very long car trips where i am not moving around much. And i have antiseptic, bandages, stomach meds...I do have a 4" by 4" medical case that stays with me in my carry-on.

I think it is best to have these things with us, we can always call our doctors, but getting the medications could be a long wait, depending where you are.

Also...(not to get too germ phobic here) but I carry thin medical latex gloves and as soon as I get in my toilet, i pull it on the gauntlets, so i am using the bathroom with rubber gloves on...and I peal them off inside out, toss them away...and keep my gauntlets clean while in a public bathroom. It skeeves me out how we so often just have to wear this stuff in public bathrooms, so I learned this rubber glove trick somewhere here. And I always feel my gauntlets are clean.

LtotheK

Crystal...GENIUS!  Totally agree with the sleeves, and washing them wears them out, so the cleaner we keep them, the better.